Master of Autism

[Patricia Davidson: 00:00:00] Hello, everyone. My name's Patricia Davidson, and I'm the vice chancellor of the University of Wollongong, and I'd like to welcome everyone to the empowering autistic and neurodivergent communities through research and practise webinar with World Autism Day only a few days away. This webinar is a great opportunity to lead he from leading experts in this area, highlighting their research and practise. Our esteemed panel will discuss how working collaboratively with autistic individuals is the most essential part of creating research and teaching initiatives that will lead to societal change and impact that makes a difference in the lives of autistic children, adults and their families. And even if we're not experts, many of us have seen around our friends and families the complexity of dealing with autism and the many myths and stigma associated with this diagnosis.

So I'm incredibly proud that the University of Wollongong is leading a crucial conversation to recognise the importance of clear, accurate information and also the importance of data driven decision making and research before we begin the panel. I would like to acknowledge the custodianship of the Aboriginal peoples of this place and the space that has kept alive the relationships between all living things. We at the University of Wollongong acknowledge the country for Aboriginal peoples is an interconnected set of ancient and sophisticated relationships. The University of Wollongong spread across many interrelated Aboriginal countries that are bound by this sacred landscape and intimate relationship with that landscape since creation.

Today, I'm delighted that webinar will be moderated by Professor David Currow, who's deputy vice chancellor of health and sustainable futures at the University of Wollongong. Professor Currow joined the University of Wollongong last year and is part of a newly created portfolio that aims to enhance and develop strategic relationships with government, industry, community and academic partners to focus on improving the health and wellbeing of the communities that we live, work and teach in. And also, issues that impact the health of our communities globally. Professor Currow has held senior leadership positions as the founding chief executive officer of Cancer Australia, which is the Australian government's cancer control agency, and recently he was the chief executive officer of the Cancer Institute in New South Wales, which is our state cancer control agency. He's also a previous president of the Clinical Oncological Society of Australia. Thank you so much to everyone who's joined us today, and I hope your safe and dry and warm wherever you are. Please note that this session will be recorded and there'll be an opportunity for questions and answers, so I'll now pass over to David, who will introduce the panel. Thank you so much.

[David Currow: 00:03:46] Thanks very much. Vice chancellor and welcome to today's webinar. It's a great opportunity for us to share knowledge from experts in the field. We have an international audience today and it's wonderful to see you all here to, to learn and to share. We have a distinguished panel today and it's a great pleasure to welcome all three of our speakers who are leaders internationally in their area of academic pursuit. I'm going to begin by introducing Professor Sandra Jones from the Australian Catholic University.

Professor Jones is the Pro Vice-Chancellor Research Impact at the Australian Catholic University. Her role provides leadership advice and support for ACU's strategic frameworks that implement the measurement of research engagement and impact, and supports research engagement and impact across the university's research areas. Sandra also leads the autism research at Australian Catholic University, including conducting research, mentoring autistic academics and supervising honours and postgraduate students conducting autism research. Sandra was recently appointed as a member of the Autistic Researchers Committee of the International Society for Autism Research, including the scope of international collaboration in this space. Sandra developed and leads Australian Catholic University's Autism at UNI Autism Inclusion Programme, which positions the Australian Catholic University as a leader in the support of autistic university students.

Prior to her current appointment, Sandra was the Pro Vice-Chancellor Engagement. Establishing Australian Catholic University engagement is a critical unit in advancing the quality, consistency and awareness of its activities and community engagement and research engagement, and whether she established the Autism at ACU Research Programme and Autism at UNI Inclusion Programme. Sandra was previously director of the Australian Catholic University's Centre for Health and Social Research, a research centre focussed on social marketing and community based research. Sandra joined the Australian Catholic University in 2014 after more than a decade as the founding director of Australia's largest social marketing research group at the University of Wollongong. Welcome, Sandra.

Elizabeth Alyward is from the University of Wollongong, is dedicated to educating and supporting children, families and professionals in developing socially inclusive early childhood settings, specialising in how child development is impacted by neurodevelopmental disorders. She is a passionate advocate for building workforce capacity and staff working with children challenged by developmental delays, challenging behaviours and autism spectrum disorder. Elizabeth is an Australian based STEM certified trainer. Her work providing training and support to a global audience has resulted in the prestigious approval by Emeritus Professor Sally Rogers and Geraldine Dawson to acknowledge Early Start, University Wollongong as an official ESDM training site. Elizabeth has also completed her PhD Studies in autism intervention and published papers in peer reviewed journals. Welcome. It's great to have you here, Liz.

Dr Amanda Webster from the University of Wollongong is a community engaged researcher whose research is focussed on creating meaningful social impact. Her research centres on leadership for inclusive education and community environments that support the achievement and self-determination of individuals diagnosed with autism or other disabilities and their families. Dr Webster is currently a chief investigator on both an Australian Research Council linkage and an Australian Research Council discovery grant, which examines the way in which school leaders utilise decision making processes and pedagogies to support students with disability. Dr Webster is a researcher in the Australian Autism Centre for Research Collaboration and a member of the Australian Society for Autism Research. She has recently led University of Wollongong to become a research partner in the Centre for Research Collaboration, which involves partnerships between researchers, autism organisations and autistic advocates across Australia. Working with colleagues in the Centre for Research Collaboration, Dr Webster recently completed a nationwide study, to gather the perspectives of parents, educators and students on the needs of students with autism spectrum disorder in schools, as well as another study examining the emergent literacy needs of children on the autism spectrum. She has been contracted to undertake consultative research with a number of groups and is involved in research to inform the government's implementation of the National Disability Insurance Scheme. She is actively involved in research projects with Departments of Education in Queensland, New South Wales and Tasmania, and is conducting several major research initiatives focussing on the role of school leaders, staff and parents in establishing effective school cultures and practises that will enable students with autism to achieve high quality outcomes across the life span. Dr Webster's research has culminated in a number of peer reviewed publications, including three research based books published by Springer and Routledge overviewing case studies and models of practise for empowering and supporting individuals on the autism spectrum in community and school settings. Welcome, Amanda.

So you can see we have a distinguished panel with a combined experience that can really take us forward in thinking about how to better support people with autistic or neurodivergent living with neurodivergent experiences through research and practise. And so the question for us really is how can we take this forward? The format for today is that there's going to be a panel discussion over the next half hour or so, but please use the ability to ask questions, which we're really happy to put to the panel as we need to. We have a very wide ranging audience today from people with autism spectrum disorder, their families through to researchers, policymakers and educators. So it's an audience with a wide range of of skills and I dare say, expectations for the meeting today. But as we move forward, I am sure that we will have an incredibly stimulating conversation. So as we think about this? I'd like to start with a question to each member of the panel, and that really is how can we most empower people with autism spectrum disorder across the lifespan? So let's start perhaps with with you, Sandra, if you're happy to to take that question.

[Sandra Jones: 00:11:51] Thanks, David. Empowerments, an interesting question just to start with. One of the things that's probably really central, there is language and I noticed, and I'm sorry to be personal, that when you were talking there, language is one of those things that's really tricky when we're talking about autism. I have a particular position as an autistic person, so I'm very much an identity first person. So I will I will talk about autistic people. I think there's so many debates around language around the way that we refer to things that make it very, very difficult to have open conversations. So, you know, people. Is it is it? Is it autistic person? Is it person with autism? Is it person on the autism spectrum? One of the things that's really central, I think, to empowerment is is listening to the voices of autistic people around, how do they wish to be spoken about? How do they wish to be involved in conversations? And, you know, I don't want to get into those debates because I think some of those debates just really muddy the water and actually create quite a hostile environment. But sometimes we're so careful with language that we actually don't get to to the really the the core issues that; as long as we keep seeing autism is something that's but to disability, something that needs to be sort of taken away from the person and you know, I understand that there are a range of issues that that parents struggle with that autistic people struggle with. But if we're going to empower people, we need to be saying not how can we change these autistic people? But how can we change society? How can we change these social barriers that we put up for people? How can we actually maximise the strengths that autistic people have and provide them with the opportunities to survive and to thrive? Autistic people have a lot of strengths, a lot of capacities, and there's just not enough focus, not enough research, not enough emphasis on those in schooling. And I'm not just talking primary secondary schooling, university education in employment. We don't focus on those strengths. We don't promote those strengths. We don't talk to children in primary school. We don't show them role models of successful autistic people out there in the community doing things. The role models we do say show them tend to be very, very narrowly focussed on. Autistic people are good at IT, say we don't. We don't show them. There are successful autistic actors, lawyers, doctors, nurses, teachers, parents. I think the best way we can empower autistic people is by accepting people, making it a safe environment for successful autistic people to come out and be open and say, Hey, I'm an autistic person. I have some challenges. I have some support needs. I have some things I need assistance with, but I can make a really productive contribution. We should be putting those voices in front of young people and in front of their parents and saying, Yes, these people need some support, but look at the massive contribution they can make and you can achieve these things if society provides you with the supports and adjustments you need, rather than focussing on your deficits.

[David Currow: 00:15:22] Thank you so much, Sandra. Liz, your thoughts and reflections? 

[Elizabeth Alyward: 00:15:27] Yes, thank you. David, I'd like to add to what Sandra has said. Historically, autism research and practise has been a deficit focussed model only, and it's only in recent years that we've seen a shift away from these approaches to a more strength based approach. However, there still remains a nuanced approach to these strengths based approaches. And I think because autism, the autism community represents such a broad spectrum of individuals, including those experience autism, those their families, their carers, the professionals working with all of these people as well. The importance of those people being well-informed and being well-informed by the people experiencing autism in terms of any approach that is delivered to increase the knowledge of of of everybody. In the process.

[David Currow: 00:16:29] Thanks so much, Liz and Amanda, your your reflections on empowerment in in this critical setting.

[Amanda Webster: 00:16:37] OK. And what I was going to talk about was really three sort of, I'm sorry, three court of key issues. One is mutual respect. The next is mutual communication, and the third is a mutual commitment to finding shared commonalities of purpose and recognition of expertise. So within that, one of the things that I think mutual respect is really about is understanding that each of us, whether we're autistic, neurodivergent or neurotypical, brings a unique perspective and knowledge base and recognising that by coming together and recognising the different expertise and knowledge and how we build that into, for example, co-production of research, which we are doing at a UOW. So it's recognising that autistic individuals may not know all about research processes, but they have a real, neat perspective. So how can we use that best to really maximise that research? And the same thing with recognising what you know, the people not on the spectrum brain that enhances that experience as well. So it's really about mutual respect. And it's Sandra mentioned. There's also, I think for those of us who are who are not identifying as autistic or neurodivergent, it's also recognising that we also both and actually both groups have to keep learning. And I think the focus has always been on autistic people need to learn, which I think lifelong learning is critical to everything, but neurotypical people need to learn. We need to in the mutual respect. We need to mutually listen and briefly grow as well.

Now, with mutual communication, I think one of the biggest barriers to empowerment and particularly co-production of practise and research with autistic and neurodivergent individuals is a barrier of communication. So what we know is that we often communicate in different ways. And so it's finding how each of us needs to communicate. So in effective research, you know, there's alternative ways. And I think for people who for want of a word, typically, you know, communicating what we think is the typical way. It's scary to think of going outside that. So we have to get past those perceptions to explore together what's the best way? And we also have to be open to understanding that not all autistic and neurodivergent people need the same things. So it's about engaging and asking them. It's about finding out if they're little kids or whatever from the people who know them best, you know? So, for example, some people are really fine with interviews. Some people want the questions and they want to write them down. Some people need some visuals to help, and they need to draw or do things in different ways. So it's about establishing that mutuality of communication. And of course, the respect.

And the last one is the shared commitment to finding commonality of purpose. And what I mean by that is we have recently formed. It was originally a community practise, has now become an association that we engage with a lot in co-production of research and practise. And one of the things that that group was founded on was the idea that we are coming from different perspectives. Parents have a unique perspective. Autistic individuals have a unique perspective. Teachers have a unique perspective or other professionals or researchers. We all have a unique perspective, and it's all about the perspective because it's our perspective. And it's only by bringing that together and recognising that we may not always agree with the power is we have a shared purpose that we recognise that those different perspectives can really contribute toward. So what we were committed to in that group was really celebrated unique perspectives and using that to help us to maximise and and have a collective knowledge and a collective play. But what we were all committed to was the same thing. And  not getting so hung up on not trying to make assumptions when somebody said something about their perspective, but to work together to understand each other's perspectives not always agree, but understand that having different perspectives is a good thing, not a bad thing. And I think to me, that's probably the essence of empowerment. There's a lot of other things that can go on a lifelong learning perspective. But really, to me, if we talk about empowerment, particularly in research and practise, that's what we're really talking about is that mutual respect, mutual communication and a shared commitment to finding that common purpose.

[David Currow: 00:21:17] Thank you so much. I hear from all three of our experts today that that this is a rapidly evolving area and that the language continues to change. Our understanding and insights continue to change. Who'd like to reflect on on where we've come from in the last five years? What what changes have there been so that today's participants can really feel that they are up to date? And for that, we need to know where we've come from and and where we've landed so far knowing that change will continue into the future. What what are the changes in language? What are the changes in the paradigm, the paradigms around which we we build our understanding? Who'd like to to take that? Look, Amandas come off mute.

[Amanda Webster: 00:22:11] I hope and Sandra say something to it and Liz, but when I was going to talk about briefly is the fact those to understand where we have to understand the history of this field. And sadly, I've been working in this field pretty much for 30 some years, so I've seen a lot of history. One of the things that I think when I get asked a lot is about why does there seem to be such a new focus? The truth is the area around autism understanding, autism recognition, autism identity is a very young field, actually. You know, it wasn't until 1980 that we even had a recognised criteria or characteristics that was done as a result of comprehensive research in the late 70s in the UK. And there's been rapid changes in understanding which have shaped our knowledge. We're also not dealing with something that you can quantify in medical or physiological terms, like some other things out there. So, you know, one of the things that I think is happen is, as you know, people have grown, some people have grown with that knowledge. Some people have not. But we have moved rapidly from a very in the early days, a really a knowledge base of looking at this as a, please forgive my language, but I'm using the old style language as a very deficit, but also a very disorder that needs to be changed in a lot of treatments and interventions were based on there to really hopefully moving to a situation where we understand that we have to work with individuals and it's not about being like everybody else. It's about empowering them. And I like to say to be lifelong learners gain the skills they need and more important to create the environments to use the skills they have in the best way possible. So that sort of our focus and I think, you know, we're not there yet, and there's a lot of researchers and professionals out there and communicating that to parents, which is also that are still in that predominant mode of treatment and intervention and trying to looking at being autistic or neurodivergent as something that needs to that is really a problem that's going to create real significant negative impact for that individual in life. So what we're trying to do with language and everything else, hopefully is change the dynamic where we're looking at,  that's not the focus that the focus is really about giving young men building their capacity. And I don't mean their capacity. I mean, everybody has to build their capacity in life, so we need to treat individuals. There is the same that they can get the skills and the knowledge, no matter if they have quite a lot of high level of language to those people who do not express themselves verbally. And so we have to recognise that looking at that, the outward manifestation doesn't tell us everything about that individual, and that's why it's so important to engage. But I think, you know, we've still got a long way to go with that.

The other thing, of course, that's the most exciting trend is the development of the advocacy and the self advocacy and the advocacy of the autistic individuals and the neurodiversity movement that really has come out of the 90s and 2000, really where we've got a lot of autistic individuals speaking up and really expressing their voice. And I think that's one of the most exciting impacts in our field. And we we need to not. I think there's a danger, though, that I see that sometimes those people are highlighted as being, aren't they special and unique? Whereas we need to be looking at, no, they're just expressing voice. Everybody has those streaks and everything. So it's not looking at those people as, oh, they're so special and above, and they're exceptional. And and you hear this exceptional in the autistic community because they're able to do that now. We need to look at that. If that's the norm, not the exception. And everybody has a voice, maybe not a literal outward verbal voice, but everybody has a perspective they can share. And so I think that's one of the most exciting things coming out that has impacted and that, as it said, people the autistic community owning that and telling us what their identity is and owning that. And I'm going to stop now because I think other people can speak to this more than I can.

[David Currow: 00:26:21] Sandra?

[Sandra Jones: 00:26:24] Yeah, I think when you say, what's what's changed and what's new, is this so much? I mean, I totally agree with everything that was just said. It's it's a very rapidly changing field in terms of your initial question about language, but probably the biggest ones would be around that person first or identity first language for a long time. And you still see this a lot. You know, people are taught person first language. You know, you say person with autism. And that very much comes from that idea that, you know, as with a lot of other things, we don't say the person is defined by their autism. That is supposedly respectful, but it positions it as is something that's separate from the person. You know, it's a deficit. It's a, you know, we don't want to identify them as that it's something that you could take away. They'd be better off without. Which is why there's that strong objection from the autistic community. So it is generally accepted in the community that it is more appropriate, more respectful because you don't say a person with neurotypical. You say neurotypical person, so that's good. And if you then say you don't say autistic person or by definition, you're then saying that's a bad thing. That's an insult. So, you know, I am an autistic person. I was when I was born, I will be when I die. It's part of who I am. I'm also Australian. I'm also female. I'm also pretty happy. I am a person with a pink jumper. I might have a different colour tomorrow. It's unlikely, but I might. I'm a person with a teacup, but I am an autistic person. Another language thing that we've seen change a lot is around the use of functioning labels. You know, they're talking about somebody as a high functioning autistic or a low functioning autistic, which are actually very, very harmful types of terminology. If you say someone's low functioning, you're totally underestimating their capacity. It's saying, you know, that person's not going to be a capable of achieving anything. If you call someone high functioning, you're actually underestimating the challenges. You know, someone would define me as high functioning. I'm a pro vice chancellor of a university. I have six university degrees. I also can't go into the grocery shopping by myself, and I have a whole bunch of social challenges that go with my autism. So, you know, functioning labels are problematic because they put people in categories and don't actually look at the whole person. I would say the biggest change, though, isn't a language change. It's a recognition of something we've always known but not really accepted, which is autism is a lifelong condition. It is not a condition that affects children, but we still talk about it like it does. If you look at the DSM, the Bible of diagnosing people, it still says a child has, that is the diagnostic criteria. It says child, it doesn't say person. If you look at the ABS data the way that it's reported, it talks about autism being more most prevalent in the age group of five to 14, which is ridiculous. It's a lifelong condition. We see higher rates reported in children because, you know, diagnosis is getting better and also in Australia, let's be realistic, if you didn't get diagnosed as a child, you're not getting diagnosed now because it's so ridiculously expensive because it's not covered by Medicare for an adult to get a diagnosis. I think that's probably the biggest change is that we're finally starting to accept that this is a lifelong condition that we have a huge quantity of undiagnosed adults who are not receiving the supports that they need massive unmet need in higher education in employment, unemployed autistic adults, people who do need support in aged care in all other aspects. Children don't grow out of autism. We don't cure autism. What we do is we hide our autistic adults. We underemployed them. We exclude them from society. So, you know, I think to me, those are the big changes. Language is always going to change. You know, in a year's time, we might have a different change in language. The big changes that recognition, this is a lifelong condition. It's a condition that is a difference, not just a disability. It comes with challenges, it comes with strengths, it comes in all different forms. And we need to change society and we need to address the barriers and provide supportive environments, not fix the person.

[David Currow: 00:31:00] Fantastic. Liz.

[Elizabeth Alyward: 00:31:04] To I would like to add to what both Amanda and Sandra have said and bring it from an early childhood perspective, which is is my area of expertise. And I think one of the significant changes over recent years is the focus on inclusion and that inclusion in early childhood services, in particular, preschools, long day-care centres is the norm and is funded by the federal government to become the norm. So, you know, this is a wonderful step forward. But however, in so doing that, this has created lots of challenges for the staff in these centres because they're lacking the knowledge and the skills. They haven't had that in their pre-service training, unfortunately in most cases. And so the need for those differentiated teaching strategies that are tailored to meet the individual needs of children so that they are able to learn and participate to their fullest capability is what is most needed. And the building of that knowledge and capacity across mainstream service educators is is one of the major focuses that we are doing right now out of Early Start, University of Wollongong. And the reason that this is such a natural process is because the play based pedagogy that characterise high quality early childhood education and care settings actually lend themselves to some of the evidence based but more naturalistic early intervention approaches. So these naturalistic early intervention processes can be embedded in mainstream services to support children with ASD and any other neurodevelopmental challenge to participate more fully alongside their typically developing peers through enabling environments and through informed pedagogical practises that facilitate inclusion for all children. Children with ASD do have the right to be involved and competent learners with a strong sense of identity and well-being. And this can only be really achieved through the building of skills and capacity in the educators in those settings so that they can make the adjustments to bring about full inclusion for these children.

[David Currow: 00:33:47] Thanks, Liz, I hear a theme coming through that we've got a workforce out there that may have some challenges in being current in their thinking in practise and whether it's in education or health care or social care. The current study of the workforce is critical to changing the path for tomorrow. How are we going to deal with? The enormity is of reaching people who may have graduated 10, 20, 30 years ago because we know that for those people, change is unlikely without a specific investment. People's thoughts on that?

[Sandra Jones: 00:34:36] I think one of the things that we can do is by taking in some ways that the easy way which is targeting current students because they they are going to go into the profession and they in a lot of ways are the source of information for the people who are working in the health professions. In the first stage, they go out and they do placements. You know, we as as educators in universities, should be making the changes now. I mean, I cringe every time I see a university programme and any university that is teaching health professionals, for example, you know, OTs, physios, nurses to use person first language that is teaching people that they should be teaching children quiet hands, you know, no flapping. That is teaching people to use terminology or approaches or therapies that we know are harmful to autistic people. So I think that's the first step.

The first step is to make sure that the programmes that we're running in universities now are actually autism friendly that are listening to the voices of autistic people. I think we could be doing a much, much better job of supporting autistic people to survive and thrive at university. I don't think we're doing anywhere near a good enough job of putting in reasonable adjustments to enable autistic people to achieve in those courses. We need more autistic teachers, nurses, doctors, physios, every profession. You know, I have seen far too many autistic students in pretty much every Australian university not get through their course because they were told you won't survive in this course because you can't do your placement because you know your communication skills aren't up to scratch or your eye contact is not good enough. I'll tell you, as an autistic person, I would much rather have an autistic nurse, an autistic doctor, an autistic speech therapist, an autistic teacher because they will understand me and my children better than most non autistic people will. So we should be making the changes we need to our courses to enable those people to thrive. If we got more of those autistic people and not autistic people who were properly trained to work with autistic people out there, they could start to change those professions. They could start to educate the people that they're working with. They could be champions in schools, in hospitals, in all kinds of other environments. It would be great to get to those people who've been working out there 10, 20 years, but that's actually a harder task. And if we made the changes now, we'd be helping future generations as well.

[David Currow: 00:37:19] I agree it is a harder task, Sandra. And that's really why I'm asking. We there's absolutely every reason to change what we do currently, but we know that that that's a slow road ahead. Liz or Amanda,

[Amanda Webster: 00:37:35] I'm going to add two things to what Sandra said, because I absolutely agree we need to be instilling this in our students and certainly at University of Wollongong, we have programmes that we're trying to do all that. There's two challenges with that, and I think one of the primary ones is when our students do graduate and they go out into systems that are still so focussed on that deficit medical based approach. Where only specialists can come in and promote communication where most specialists can come in and do things is is really it's sort of soul destroying. So it really does a lot of the things. And they're also I get students that come into our courses. They've never actually seen this in practise. And so they have nothing to refer to. So I agree that the more we can get autistic voices in here, but also we need to be working at the higher level to get those foundational changes with how schools run so that they're more inclusive of everybody with how early childhood organisations are seeing and promoting play based learning and stuff where they encompass and they feel more empowered to utilise their own natural skills in that when they think about that, is helping those practitioners to also see, particularly in the idea of educators, early childhood, even parents, that there are some natural it's you don't have to be a specialist. There's a lot of good getting to know caring, listening that actually will go a long way. So, you know, if you get to know the student, if you get to know your child, if you work with them to figure out how to communicate. If you go and you know, get that, there's a lot more you can do that's on the ground. Just good, effective stuff that will actually go a long way. You don't have to wait until the specialist comes in. There's we've still got such a specialisation, but I also think with our government and our we've still got we still got a lot of driving mixed policies and make structures, makes funding arrangements that are actually discouraging some of the practises that we need to have. So we also need to be working at that bigger level to make sure that when the students go into these settings, they get an opportunity to use those skills and those attitudes they've learnt rather than heading a wall of the opposite coming against them. They don't feel like they're battling upstream a bit. So I think it's also still working to create those better systems and structures. But school policy, environment, things like that, that can support those practises. It's great to have people with the attitudes, but we also don't want those to get squelched when they go into the workplace, which is really important and sadly happens, sadly happens. So we we've got to work at those.

And I think also, as I said, empower those innate, particularly with parents and, you know, help you to see what things they already can do that they don't have to go get specialist training, but work with them on a on a basic level to instil their confidence. And early childhood is the same. You know, early childhood educators, a lot of them already do fantastic things. We just need to help them see how that connects to the needs of these individuals. They don't have to be super specially trained. There's actually a lot they can do already and helping them to find those connections is really important, I think.

[David Currow: 00:40:46] So in the couple of minutes before we open up to to questions from participants today, when I read your bio, Sandra, the issue around the programme that you've developed autism at UNI Inclusion Programme. Can you just describe that to members of the audience that may not have come across it before? And what your what forms it and what it's achieving?

[Sandra Jones: 00:41:15] Thanks, David. So I have a very strong passion for having more autistic students survive at university and a view that the reason that we have such high dropout rates isn't because autistic students don't have the intellectual capacity. It's because we don't have sufficiently inclusive universities. And I looked around at what other universities were doing, and a lot of universities have mentoring programmes, which are wonderful. And I went and visited lots of them. And what they said was they work really well, but they really frustrating because, they are limited by they provide the mentoring and then the students identify other barriers, and the mentors can't help. So I wanted to look at what do we need beyond mentoring? But I also discovered that every programme had been developed and implemented by neurotypical people. So I went back to scratch. I recruited autistic students and autistic alumni from our university and talked to them about what would a mentoring program look like. But what else do we need beyond the mentoring program? So we developed quite a comprehensive mentoring program with training for the mentors and the mentees. We have an advisory group that consists of autistic students and alumni from the university and from other universities that guides all of our activities. So as well as the mentoring, we provide study skills. We provide a whole range of resources around things to assist students in settling into university, finding out more. We run student projects. We provide things like sensory maps of the campus. Information on things like reasonable adjustments. Understanding the university. We run awareness program. We have sensory rooms on campus, so there's somewhere quiet that you can go and escape from things. We provide a range of other resources and information. We do activities with the library. We have social activities. So basically students come to us and they say this is something else that would be helpful for us as autistic students and our advisory group gets together and works out how we could actually make that happen. So it's really very much driven by the autistic students. What do they need to make university more inclusive and more supportive and more welcoming? And then all of the activities are driven by autistic students and alumni who review all of the activities we do. And then we implement them across our campuses.

[David Currow: 00:43:47] That's a fantastic overview, and I'm sure you'd be delighted for members of the audience to reach out and get more details about that, Sandra, but what a what a fantastic program.

[Sandra Jones: 00:43:57] Absolutely be very welcome to discuss it.

[David Currow: 00:44:00] Great. Thank you. We've got a couple of questions from from the audience and we've touched on diagnosis already. The first of those questions is is it helpful for people to have an actual diagnosis or can they self-assess then just identify as being on the autistic spectrum disorder?

[Sandra Jones: 00:44:22] I'm sorry, I'm just going to have to jump in and answer that one. I'm going to call dibs as the person with the diagnosis on the panel. That's a question I get asked a lot by autistic people. You can absolutely self-identify, and I have to say self identification is absolutely valid. Particularly in, as I mentioned before, our our system, where it's expensive to get that diagnosis. So it really is a barrier for people. A lot of people ask me, though, is what's the benefit as an adult of having a diagnosis? You know, it's too late for early intervention if you've already coped through most of your life, probably not going to get NDIS. What's the benefit? Personally, I think there's lots of benefits for a diagnosis. There's the it's self affirming and a lot of ways it helps you really understand yourself better. I think it helps you understand a lot of the challenges, helps you connect to the community. For me, I found it very empowering in terms of being able to advocate for myself in the workplace and in other areas. I think the biggest change I would like to see in Australia would be for our government to actually fund adult diagnoses. I think it would have huge positive impact for the mental health and wellbeing of autistic people and really, really make a difference. So self diagnosis is valid, and for many people, it's the only option you've got. But I think an actual diagnosis brings a huge amount of benefit. That's not just my opinion. I've done research and I do have evidence. I know we've got limited time, so I can't share all that now. But yeah, I think there are a lot of benefits to diagnosis at any age.

[David Currow: 00:46:07] Liz or Amanda, thoughts on on that.

[Amanda Webster: 00:46:10] Just want to add some quickly, and I totally agree with Sandra about adult remain cheap for children either. And we have real barriers and the two other reasons for diagnosis which come up. And sadly, I wish this were not the case, but one is it can protect your rights. In some ways it can. The other one is, and I think the first one is that sense of belonging and identity that people tell me. But the other one is that,  it can affirm your rights, and the truth is that sometimes it's the gateway to getting support. I wish that was not the case. It shouldn't be. But unfortunately, at the moment it is, and I will say that we do even with children, because of the way that things are recognised in different sounding systems, that sometimes the diagnosis can be quite expensive and it's different than it is with other conditions. So there's a lot more expense with getting a diagnosis of autism than there is with getting a diagnosis of intellectual disability, for example, in order to access certain funding things. So I think, yes, it's very bad for adults, but it's also very it's not great for children either, and families it can be quite problematic. So but I will support everything Sandra said that, you know, I have some reasons as well as is interested about the belonging and I don't want to speak from a personal I'm speaking from what people have told me. So.

[David Currow: 00:47:33] And Liz, I saw you come off mute?

[Elizabeth Alyward: 00:47:36] Yeah, I agree with both Sandra and Amanda, of course. And again, coming from the early childhood perspective, yes, diagnoses for children with ASD is not only expensive, but it's a very long waitlist right across Australia. Six months to 12 months is is a typical waitlist. But once that diagnosis is made, then it does challenge all of the people in that child's life to make the necessary adjustments, which which is the wonderful thing we learn. We all learn so much from working with young children, with ASD, and without them we would be very ordinary in our practise.

[David Currow: 00:48:20] Great to thank you for that. Sandra, let's go to you for the next question. As a fellow disability and media researcher, I'm keen to know if the panel sees anything that should give us confidence that specialised schools are going to disappear.

[Amanda Webster: 00:49:10] I was going to say this is something I can speak to quite a bit. The answer to that is sadly no. However, that would be my goal. And it's certainly the goal. One of the things that we've changed in our programmes here and certainly in the work we're doing here is really saying that foremost, we need to be looking at the human rights model and how we provide services supports in our attitudes and how that shapes and basically saying that our first and foremost assumption should be it's the right of every child to belong and every adult to belong in the society. And our whole focus should be on chipping away at the barriers that are preventing that person from participating fully, from attributing to their society and from a feeling that sense of success, well-being and achievement. And of course, that's in the eye of the individual and what they want to be doing. Unfortunately, we need to chip away at those ideas that specialist schools are really needed to give these people the special, unique things they need. Unfortunately, they do prevail and they do present, I believe, lifelong barriers. Certainly, there is sometimes specialised instruction that's needed for any individual in any setting to get something. But the long and short of that is at the moment the way we're going. I don't see those is going away and I will give you an example and I will not name the place this happened. But there was an inclusive education award given in a state recently and an education department it was actually given to a special school. So the problem, I think one of the key barriers is we don't really understand what a lot of people have real mixed feelings about what it means to be included in society and what it means to be included in education as a pathway to inclusion in society. And so really, that it is the right and the assumption should always be on the capacity and the right of the person to be there, rather than people having to prove they can be there. And the one I hear all the time is it can't be there because you can't cope. And instead of saying we can't cope, what is it that needs to change in the environment or the person needs to to learn how to do in order to be able to feel confident, successful in that setting? So that's that that's the short answer to that. And that's a short one. But we need to keep chipping away at that door for sure.

[David Currow: 00:51:30] Thank you so much. We've got some questions that we won't be able to get to today, and we will make sure that there is those questions are put to the panel and they'll have an opportunity to engage with the people who've asked them. So thank you to the people who have posted questions that's been really, incredibly helpful. So what have we learnt from today? I think for someone who is from outside this, this area of academic pursuit, I've learnt a lot. Firstly, I've learnt that that Liz is here and should be at the pub. She submitted a Ph.D. today, so the fact that she's here is way above and beyond. What else have we learnt? I think we've learnt that has strengths based approach is going to be absolutely critical as we move forward and that that is a strengths based approach that works for people with neurodivergent conditions as well as for the rest of the community. And there's responsibility in both sides to actually make this work, to seek out the strengths, seek out people's strengths, support people and their families. We haven't spent a lot of time touching on families today, but that really is absolutely critical as we think about this, that we are lifelong learners for a lifelong condition, and I think that has come through very strongly and in the discussion today. And although our data may reflect the experiences of children, those data are not accurate and are not reflecting what's happening across our our community. This is a lifelong diagnosis. And as we work with people, we can indeed help right across the life cycle. It'll be important in in future webinars to think about some specific groups, including the elderly, in that space, because I'm not sure that we have prepared a social or health system that is going to to work in that space, that co-production as both practise and research is critical that we've got a long way to go in ensuring that the workforce is across key developments in this area as the research moves along. And I really do like the point that you made, Amanda that really we're talking about a 40 year period to get to where we are today. That's a very short period in terms of research, particularly research into practise and into policy. If there's a time lag of up to two decades as new evidence becomes available, that really is an enormous challenge. So as a young field, extraordinary things have happened, but we have so much further to go. And so I'd like to thank each of the panellists, not only for your time today, but for the extraordinary work that you continue to do that creates you as experts in order to be on the panel today for your advocacy, for your passion in this area and for the leadership that you continue to show to each of you. Thank you for sharing your wisdom and and your thoughts and to everyone who's here online today. Thank you for making the time. I hope this has been useful. Please reach out to the panellists afterwards as other questions or comments arise. And as I say, key questions will be posted in the couple of questions to which we to which we didn't get. So thank you for your time. Have a wonderful day. And I hope this has taken forward your understanding of the opportunities for neurodivergent people to live fuller lives right across the life span and across our community. Have a great day.